Category Archives: cystic fibrosis

Man Musk

Posted on by
6

“What’s that smell?” my wife asked, as I stood there, sweating, after working outside on a hot day.

Now this was a few years ago and I probably had my manly tool belt strapped on and was looking pretty studly, or as studly as I can possibly look without a bag on my head.

“It’s my Man Musk,” I said. “Would you like some?”

Hey, it's my Skuncle Joe.

Hey, it’s my Skuncle Joe.

“No, I don’t want some. You smell ripe.”

This confused me because don’t we eat fruit when it’s ripe? So, I smelled good enough to eat?

Nope, wrong, not good enough to eat, as I chased her around the kitchen trying to hug her and cover her face with my armpit. But she’s quick like a rabbit, and I couldn’t catch my baby mama.

So, “man musk” is our term now for me working up a nice musky smell. And, after eight days in the hospital and my last shower the day of my jailing, I’ve brewed a nice healthy batch.

It may be my imagination, but while I was outside building a gate today I noticed a number of attractive female joggers running by my house – some more than once. I told my wife, who rolled her eyes, but reminded her that man musk is high in protein and pheromones. It makes me irresistible, romance-novel desirable.  And there was a breeze today, so it all makes sense.

Man musk has a quite a history, dating back 100s of years. Check out this lesser-known Robert Frost poem:

Oh, Man Musk, how I love ya,
My eyes burn, my nose runs,
Watch me work and saw,
And flex me mighty guns.

Ladies stop and stare,
Nose up in the wind,
Take a deep sniff if you dare,
Soon, you’ll say, “I sinned.”
Oh, the power of Man Musk,
Rhino horn mixed with beaver tusk.

Yeah, I’m ripe and tart,
Smelling worse than a fart.
I’m too stupid to know,
Not as smart as your average Joe.

Day 5 in Captivity

Posted on by
4

20130519-185146.jpg

It’s as if the hand of God – Monty Python’s God – reached down and plucked me, kicking and screaming, from my life, my wife, and my daughter.

Ye shall not finish the gates for the picket fence this weekend.

Ye shall not attend the concert in Topanga on Friday.

But ye shall be locked in a small room and chained to a machine for 21 hours a day. Ha, ha, ha.

If given the choice between two weeks in jail or two weeks in a hospital, I’d have a hard time choosing. Would I have a private cell? I can’t imagine the food varies much, though if it were Mayberry and Aunt Bee were cooking, jail might look even better.

No one needs to listen to my breath signs six times a day behind bars, but I don’t worry about a shiv to the gut in the hospital, though there are infections, blood clots and other painful add-ons during the stay. Hard choice.

For the first time, we exotic animals have our own floor at the zoo, and a gym to ourselves. Huge kudos to the CF team here for making stays better for us hospital lifers.

This floor is quiet like a library, day and night. No 2 a.m. hallway conversations. No liver transplant teams clogging the way. No unpleasant smells that penetrate your mask and make you lose your appetite.

My room is gigantic and begs for a party. It’s a negative pressure room with a space-lock entry room. The main door is hard to open and makes a whoosh sound like opening a walk-in freezer. I thought the 100-year-old PCT was going to have a heart attack wrangling the scale through the double-door system.

I have a great view. And best of all I can see and hear the trains, which I love. I just added, “hop a train and ride it to Arizona,” to my bucket list because that’s what I think of when I watch them.

Run, Unknown, run.

Could I run fast enough to catch one? Doubtful, but if I could I would. I’d have my wife and daughter in a chase car, as I rode along listening to the sound of the wheels on the rails, breathing the fresh air (once we got out of LA). Destination: Phoenix hotel with a large pool and water slide.

Before I checked into this sterile bed and breakfast, I told the doctor I thought I had a thyroid or auto-immune problem. The blood tests came back and it looks like its door number two. More to come on this development.

Knock on wood that I all have to report is what I just wrote. They haven’t killed me yet, but I’ll let you know when they do.

Cystic Fibrosis: The Musical

Posted on by
1

20130516-201851.jpg

[Written on day two of my current hospital stay]

Sitting at the dinner table with my wife and daughter the night before my hospitalization, I came up with what is either the best or worst idea I’ve ever had: CF: The Musical.

I ran the idea past both of them, hoping to lighten the mood. But first I had to explain “irony” to my daughter. Then I broke into song (BTW, I can’t sing):

(In a super-happy Broadway show-tune style)
I’m going in the hospital.
I can’t wait. Yeah, yeah.
I am going in with one ailment,
but coming out with three or four,
oh joy, how nice – what a gift.
My lungs feel better, but now I can’t pee or see.

It went something like that.

Then I sang “The Phlebotomist” for her, after explaining its definition.

(Pretending to whip open the door and flick on the lights)
It’s 4:30 in the morning. Did I wake you? Were you sleeping?
I’m the Phlebotomist, and I’m here to draw your blood.
Did I wake you? Were you sleeping?
Nothing a dozen cans of Red Bull won’t cure.
Give me your arm, I’m going to poke another hole in it.
Did I wake you? Were you sleeping?
This will hurt but I’ll blame your vein if I screw up.
Mr. Wilson, I presume?
No? Oops, sorry. Wrong room.

Yeah, it went like that with my daughter and wife joining in. We sang about the weekend doctors who come to the door and ask you how you’re doing, but don’t want complicated answers and are there just to collect $300. And we sang about respiratory therapists.

And we had a laugh.

I know CF doesn’t feel like a laughing matter most days, or at all for many, but somedays there is no choice but to laugh away the darkness that hangs there, waiting.

CF: The Musical felt like a victory of the moment.

Addendum to yesterday’s post

Posted on by
5
If I could really shape shift, I would look like Don Draper, but a lot happier.

If I could really shape shift, I would look like Don Draper, but a lot happier.

INT. Today’s CF Clinic appointment – morning

Nurse: Hi.

Unknown (wearing a yellow hospital mask): Hello.

Nurse: You’re looking good. So tan.

Unknown: Thank you.

Nurse: You’re not feeling well, huh?

Unknown: Nope.

Nurse pauses, looks at Unknown again.

Nurse: You look good. Your hair looks different, short. It’s nice.

Unknown: Thanks.

Nurse: I must have caught you after a haircut, huh?

Unknown: Yep

Nurses takes another look at Unknown.

Nurse: Are those new glasses?

Unknown: Yep.

Nurse: They look good. Very stylish.

Unknown: Thank you.

Yes, after writing yesterday’s post, this happened. A gift from the blogging gods!

I’m not sure I nailed the exact quotes, but I’m close. The nurse is super nice. And everything she said was complimentary. I could, however, detect that there was something about my appearance she couldn’t put her finger on. She just kept looking at me over and over. Kind of like I was . . . wait for it . . . a person she didn’t recognize. I am, after all, a master shape shifter.

And then I blew the lowest PFT I’ve ever blown in my life. HUGE FAIL. Tomorrow I go to jail for a dose of IV antibiotics and the most hated drug I’ve ever taken – oral steroids. Hello, hallucinations. Soon, I’ll really believe I can shape shift.

Happy, happy, joy, joy, it’s off to jail I go, where I’ll huff and I’ll puff and I’ll blow . . . nothing down.

I’m a shape shifter (be thankful you’re not)

Posted on by
3
Ah, my favorite self-portait photograph. I look the same each time you see me.

Ah, my favorite self-portait photograph. I look the same each time you see me.

If there is anything I don’t understand about human nature, it’s the propensity or desire to comment on a person’s looks when you greet them. I’m not talking about a “hey, you look great,” or other generic comment. I’m talking about something more specific – a detailed analysis or critical review of the way the person looks.

It’s happened to me most of my life.

I would understand if I gained 500 pounds thanks to a bacon-chocolate and Cheetos addiction, and it came as a surprise to the other person. Yes, I get it. Comment on how I look. I understand. I’m giant now, a man-sized Oreo. I have a problem. I’m quite different from the last time you saw me. Critique away. You have my blessing.

Or, what if I shaved my head and had a bright red target tattooed on my noggin? I might receive, and deserve, a comment or two. I get it.

But what I don’t understand are the people who comment on subtle differences in one’s looks – the proofreaders of human appearance.

“You look fantastic,” my business colleague said to me after an extended break from bumping into each other.

Now I’ve established that that’s a nice way to greet someone. Nothing wrong with it. Nice, perfectly delightful.

But he didn’t stop there, adding the tagline: “Yeah, the last time I saw you, you didn’t look so hot.”

Okay, rule number one after saying, “you look fantastic”: stop there. That’s a winning line. Nothing more need be said. You can only get in trouble if you add anything (especially if you’re a man speaking to a woman at work, which can only lead to a possible dismissal based on sexual harassment charges).  Again, you can only screw it up after the first compliment.

And this was dude to dude. Do we guys ever comment on each other’s looks when we meet – other than maybe a, “looking good, man.” “Yeah, thanks, man. Been hitting the weights hard, eating lean.”

The most recent comment: “You don’t look like the same person,” the carpenter helping me build my picket fence said to me after not seeing each other for 5 months, and for only the second time ever!

How is that possible? Not the same person? I guess it’s the 10K I spent in Argentina on a face transplant. And to think I thought no one would notice. 

Now, most normal people might ask for more detail: “Hey, what do you mean by that? Is that good or bad?” Not me.I don’t want to know because I either look bad now or at some point in the past. So, I don’t want to spend the day fretting about how I’m deteriorated since you saw me last, or how I looked like crap the last time.

I guess it’s just part of my life and the sign on my forehead that reads: Tell me how I look. Win a pony.

My daughter borrows my story

Posted on by
13

I used this photo a year or two ago. Sorry. I’m tired and couldn’t find the one I wanted to post. I’ve been so busy lately and want to get a blog post out.

“Did you see her essay?” my wife asked. It was first thing in the morning.

“Essay? What essay?”

“You’re in it.”

“Really? Can’t wait to see it then.”

I found a draft on the computer.  I was mentioned along with my pal, cystic fibrosis. Great. Let’s tell the world.

It’s my secret and one I’ve done my best to keep on the down-low throughout my life. And my wife has done a good job supporting that, though it’s hard to hide it from your friends when you’re in the hospital three times a year.

And then there is my daughter.

I’ve been able to control my story over the years, but I can’t control hers. My story of CF becomes her unique story of CF. I can’t censor that.

So, here’s the essay. As a writer, I have to qualify it a bit: it’s a 5th grader’s draft on a tough subject, and I’m going to be in big trouble one day for posting it here, if she finds out before I’m dust in the wind.

“Prayer is Powerful”

            I believe prayer is powerful.  God does listen to us when we have a problem and comforts us.  I think that because I had an experience with prayer where I was very worried.

            My dad has Cystic Fibrosis and sometimes he has to go to the hospital.  I always feel sad and worried when he is there because my mom and I don’t know when he will come back.  Often I pray for a cure for his sickness.  God doesn’t always do things the way you think He will though.

            Once when he was in the hospital, they said he had to have a sinus surgery.  I was  a little scared for him because I didn’t know what would happen.  My mom and I went to the hospital so we could be there when they finished the surgery.  I prayed for my dad that the surgery would help him.  When they finished, they let us see him, and he was fine!  I was so happy that he was ok.  About a few days later, they let him come home.  He still has to go to the hospital sometimes, but he always comes back healthy.

            I think that prayer does help.  God might not do what you prayed for, but He always helps in some way.  Prayer also comforts me because I feel like someone does care up there.  If you trust in God and pray, good things will happen.

            Prayer really helps me when my dad is away.  I think prayer is spiritually and physically refreshing.  It’s good to know there is always someone watching over you and listening.  Even if you aren’t religious, it never hurts to pray. 

All work and no play, or blogging

Posted on by
7
This is fun with hypertonic saline at a hotel. The sun was coming in the window and I thought it was cool looking to blow into the light. Yes, I have problems, like having to get up early on business trips to do treatments.

This is fun with hypertonic saline at a hotel. The sun was coming in the window and I thought it was cool looking to blow into the light. Yes, I have problems, like having to get up early on business trips to do treatments.

I just finished two back-to-back work trips. Drove for both of them as I haven’t been on a plane in . . . a long time. So long I don’t remember.

Bad things happen to me on planes. But I do miss going places on business and with my family. We do, however, seem to find plenty of local places to drive to and still have a boatload of fun.

I do miss going to Hawaii. And I’d like to go to England to see a soccer game with a couple of friends, then get arrested and spend the night in an English jail. How cool would that be? Would I get “the rack”?

When I saw the date of my last post, I couldn’t believe how long it’s been since I’ve written anything. I know why blogs die off. It takes a lot of energy to keep them going. I’m in year four. Yay.

So, what’s new to report on. Looks like a good chunk of my lung function isn’t coming back. I’m hovering around 50%. It seems like I went from 70 to 50 overnight, but that’s not true. It took some years to do it. I fought every step of the way. However, whereas my PFT chart use to contain flowing, smooth hills and valleys, it now looks like an earthquake graph. Up and down, up and down, but mostly down.

I had to work during my daughter’s spring break. Not much choice, but I felt bad. It’s always a balance between keeping the job that pays well and gives great benefits and spending time with my wife and daughter.

I’ve also been building a linen closet door. It’s the door from hell and has schooled me, and beat me, and perplexed me throughout the process.  I almost gave up. But I’ve learned a lot of lessons, and that has value. I added my ninth coat of Tung oil tonight and will never use the stuff again. Back to shellac. I’ll post some pictures next week.

That’s it. I’m here, breathing. I woke up today, which is always a huge win. The rest is a bonus.

Frozen Shoulder on a Stick

Posted on by
4
No frozen shoulder here.

Not just a shoulder, the “amazing” shoulder. Do you have amazing shoulders? How about lungs? I’d rather have amazing lungs than amazing shoulders. Just would, that’s all.

What’s the lifetime world record for number of doctor’s visits and medical tests?

I must be getting close to it. At least it feels like I am.

Last two weeks: CF clinic, ENT doctor, dentist, lung scan, ortho specialist. And the sleep study and O2D2 at night before that.

Results: I have hearing loss thanks to the endless doses of IV Tobramycin I’ve sucked down, and, as a bonus, a frozen shoulder thanks to who knows what.

I didn’t need a test to tell me I can’t hear certain high sounds anymore. And my shoulder still moves and isn’t technically “frozen,” but it sparks a ton if I move it the wrong way.

But I did not like the lung scan, Sam I am.
I did not like it at all with green eggs and ham. 

“Lie down, please. Take the paper bag off your head.” Those words sound much better when they come from my wife.

The super-efficient nurse placed a mask on my face, told me to hold it tight and not let air escape, then injected something into the mask and told me to take a deep breath and hold it for 10 seconds. This process reminded me of a scene in a movie with two drug addicts getting high. Could I have the colitas spray next time, please, nurse?

I didn’t ask what she made me inhale. I didn’t want to know, as my new “living day to day” attitude gives me “who gives a shit” powers. But I did panic because I couldn’t breathe normally, and I allowed a little air to slip out of the mask.

Why is everyone running away? Damn, Nurse, you weren’t joking about holding the mask tight.

Next came the IV and this nurse nailed it. Wham, bam, thank you, ma’am – it is possible to start an IV without it feeling like someone hammered a nail into my arm.

She injected another substance I had no desire to know the name or chemical composition of. Then, unlike a CT scan where you’re inserted into the oven to be cooked, the oven came to me, surrounding with me with a metal plates to take pictures of my air bags, changing positions and moving around me several times.

This is the worst photo ever. It's the shot I took as the machine was passing over me. It was everything I could do to get my iPod out and snap the picture.

This is the worst photo ever. It’s the shot I took as the machine was passing over me. It was everything I could do to get my iPod out and snap the picture.

At the ENT, I got the bad news about my hearing. And the ringing in my ears? Here to stay thanks to my feeble brain’s interpretation of the damage.

There was a bright side to the visit. We spoke about our kids – he has two very young ones – and I mentioned how in a German hospital years ago I hoped I would live to see my daughter turn 5. That would be great, I thought. If I can just make it to see her turn five.

Where did the time go? I asked. It’s a blink. One day she rode on my shoulders, the next she was 11. Now I want to live to see her graduate high school, which is odd because it was my mother’s goal to see me live to graduate high school.

[The following sentence is meant to be read in a crusty old British accent]: Twist of fate? Perhaps. Perhaps not, my good man. Tea, anyone?

Then came a long, strange pause as I waited for the doctor to shove the scope in my nose. Pause. Wait for it. More of a pause. Pause. Wait for it. Is the machine not working? Okay, he’s moving. He’s awake.

“Sorry, I was getting teary-eyed,” the doctor said.

What? That’s strange. And he’s serious, not sarcastic. Hmm, that doesn’t happen every day. Very unusual.

Some doctors are human. At least the good ones are. And I found one.

It’s a good day when that happens. A good day, indeed.

Invaders storm the walls of my castle (another bad clinic appointment)

Posted on by
4

INT – Castle – afternoon

The lead knight rushes to Unknown with important news. 

It's time to visit my happy place tonight. It looks like this. Ah, that's better. Ocean breeze and salt water.

It’s time to visit my happy place tonight. It looks like this. Ah, that’s better. Ocean breeze and salt water.

Knight: The scum have surrounded the castle and are upon the walls, Sir.

Unknown: All right then, man, no need to panic. We’ve been here before. Piece of cake. Let’s drop some boiling oral cipro on their heads.

Knight: Been there, done that.

Unknown: What? What do you mean by, “been there, done that”?

Knight: We already tried the boiling oral cipro, Sir. It’s lost it touch, it has.

Unknown: Really? Well, that’s not good. All right then, Plan B. How about some flaming balls of IV tobramycin to knock them down? That’s always a game-changer.

Knight: Been there, done that.

Unknown: My God, man, would you stop staying that, please?

Knight: Been there, done that?

Unknown: Yes, that. Exactly. Thank you. It’s no time for negativity. Are you quite sure the last barrage had no positive impact?

Knight: Yep. Not this time. Quite surprising it was, if I must say so. Just bounced right off of them. Quite amazing to see. Tough little buggers and quite angry.

Unknown: I see. Brilliant. Well, what else have we got here?

Knight: For lunch?

Me: For lunch? Are you daft, man? For heaven’s sake. For lunch? Not for lunch, imbecile. To drop on them. To keep them out of the castle.

Knight: Hmm, let me think. [pause while he thinks, and thinks some more] Well, lunch was pretty awful. It might work.

Unknown: Oh, my god. That’s the best you’ve got?

Knight: Well, yes. The ham is quite spoiled. Damn awful. They’ll be throwing up for hours if they eat it. Buy us some time, it will.

Unknown: Oh, damn me. We’ve run out of tricks, haven’t we? I guess we have no choice. Drop the ham. Drop it now. Let’s buy a few hours before we’re buggered for good.

Knight: But we’re out of ham.

Unknown: What? But you just said we had ham.

Knight: Well, not technically. I said perhaps we’d like to consider dropping lunch on them. But we ate it all.

Unknown: Even though it was rotten?

Knight: We used lots of mustard.

Unknown: And the men didn’t leave even a tiny bit of ham for later?

Knight: No, I’m afraid not. We ate all of it.

Unknown: And you didn’t get sick?

Knight: Oh, we got sick all right. Right horrid, it was. Oh, terrible squirts. But we was hungry. What’s a man to do when his stomach calls?

Unknown: Skip the detail next time, my dreadful knight. So, if I’m to understand correctly, what you’re saying is that we’re completely screwed?

Knight: I guess I am. That sounds about right, Captain. Completely screwed. 100%.

Unknown: Very well then, I’m going to walk to that wall over there. And then I’m going to climb up on it, at which point I want you to give me a nice solid kick to the arse, sending me over the edge and into the intruders. I may as well take a few of them with me on the way out. Are you clear on the new plan, my good knight?

Knight: Crystal, Sir. It will be my pleasure, your royalness, to kick you in the arse. My pleasure indeed.

The End

I have no right to complain. Every day I grow old with CF is a gift, but some of those days have their challenging moments. Today was one of those days.

My PFTs are still down after IVs. Or, no improvement. And the reason I can’t hear higher tones anymore is because I’ve lost a portion of my hearing thanks to the dozens of doses of IV tobramycin I’ve taken over the years – one drop at a time. Ouch.

Tomorrow will be a better day. I have a shipment of ham on the way.

A guest link from Sir Sean

Posted on by
2

So, my good friend in England, Sir Sean of Englandshire, decided to walk to his computer, turn it on, visit his own blog, and write a blog post. Happy days. And he wrote a good one. It’s about how technology is changing the way doctors monitor cystic fibrosis treatments.

Why doesn’t my US CF clinic have anything like this?

I imagine one day sending information from my daily treatments and FEV1 to my clinic. My PFT graphs won’t have dots placed every three months. Instead my peaks and valleys will be smoother, and I’ll see trends soon rather than getting a nasty surprise at clinic. Perhaps my blood pressure won’t skyrocket on clinic days if I already know what to expect.

This is Sir Sean as young man getting ready for his mandatory military duty for Queen and country. Oh, England, they love those old-school battles still.

This is Sir Sean as a young man getting ready for his mandatory military duty for Queen and country.  England, how they cherish old-school war technology and sword battles still.

I’ve read a few articles on doctors using iPhone apps to measure patients’ heart rates and other body functions. I’d really like it if I could go to the doctor but not go to the doctor. That’s my dream.

So, please click on the link at the bottom and check out Sir Sean’s post.

BTW, Sir Sean is a big fan of the West Ham soccer team. I haven’t had the courage to tell him I played FIFA 13 on Xbox with my 11-year-old nephew and I chose West Ham. They lost 1 to nil. Sorry about that Sir Sean. They bite virtually too. It clearly had nothing to do with my soccer playing skills.

Here’s the link. Get ready for more technology to help us battle cystic fibrosis.

https://www.tumblr.com/seanset/41292567739/i-neb-insight-online